Local Support Groups Research Articles

Impact of Long COVID symptoms on individuals in Hong Kong: Implications for occupational therapy practices

Introduction: From occupational therapy perspective, this study investigates the nature and impact of Long COVID symptoms on individuals in Hong Kong according to their gender, age, and occupation and to understand their treatment needs Method: A total of 193 participants with an acute COVID-19 episode 3 months ago and having recovered from it who were experiencing subjective symptoms of Long COVID were recruited through snowball sampling from local COVID-19 support groups and healthcare facilities to participate in a cross-sectional design via an online survey assessing their symptoms and the impact on daily activities, and exploring their treatment preferences. Findings: Respiratory, systemic, sleep, and cognitive symptoms were found to be the most prevalent, with significant variations in symptom severity and impact on daily life across different age and occupational status groups. The treatment preference was quite strongly inclined to traditional Chinese medicine. Conclusion: This study has uncovered the critical and yet recognized roles of occupational therapy in managing Long COVID impact by identifying the potential gaps of occupational therapy in its management and calling for advocating promotion in the community and interdisciplinary collaboration with traditional Chinese medicine. Implications about occupational therapy management and the healthcare policies for tailoring treatment programs are discussed.

SOCIAL NETWORKS OF CHILDREN AND PARENTS IN SINGLE-PARENT FAMILIES

This paper examines the social networks of children and parents of single-parent households, focusing on the special challenges and resources that characterize these families. Single-parent households face a specific set of challenges like financial stress and social isolation that can powerfully influence the well-being of both children and parents. We explore these questions using a mixed-methods approach that combines in-depth qualitative interviews and surveys to understand the structure and functioning of these networks in terms of emotional, social, and practical support. The great majority of children in single-parent families rely on relationships within peer groups, which are essential for children both as sources of emotional resilience and as reflecting their growing sense of social development. On the other hand, other networks for parents exist, such as extended family, friends, and community organizations, that are significant in reducing their levels of stress and sense of belonging. The study outlines how social support through community resources—the availability of local support groups, educational programs, and the like—can help fortify these social connections and family relationships. Ultimately, the study is looking to inform policymakers and practitioners about specific services single-parent families need, so that these can be leveraged in developing targeted interventions to strengthen familial and community relationships. Because we recognize and foster the social networks that are accessible to these families, we can be contributing to better outcomes for children and their parents.

Abstract A115: Utilizing digital storytelling to improve the recruitment of Black and Hispanic patients for a genetic predisposition to prostate cancer screening trial

Abstract Introduction: Clinical genomics leads to more effective cancer prevention, diagnosis, and treatment. Prostate cancer (PC) significantly impacts Black and Hispanic men, but participation in clinical trials and PC risk management methods like genetic testing and screening remains low. Barriers to diversity and inclusion in clinical trials include cultural and socioeconomic factors. Digital storytelling is an effective tool for building trust and increasing community engagement. We aim to develop and assess the use of digital storytelling to improve recruitment of Black and Hispanic patients in a trial for men at high genetic risk for developing PC (clinicaltrials.gov NCT03805919) and raise awareness of genetic testing and enrollment in clinical trials within these communities. Methods: Guided by the Assessing Community Engagement Conceptual Model, we will establish a community advisory panel (CAP) comprised of patient advocates, community, and clinical partners with a strong interest in increasing clinical trial representation of Black and Hispanic patients at high genetic risk for developing PC. CAP participants will be identified from existing partners and through snowballing techniques, which involve asking partners to recommend other CAP participants. The CAP will co-design storytelling interview questions, baseline, and outcome assessments and collectively determine effective methods for digital story dissemination. To evaluate the impact of storytelling on awareness, interest, and participation in genetic testing, medical management, and clinical trial recruitment among Black and Hispanic men, outcome assessments co-designed with the CAP will be administered pre and post-video viewing and include viewer qualitative interviews. Results: Filmed interviews with Black and Hispanic participants will be conducted. Interviews will focus on participant experiences with clinical trials, genetic testing, and cancer risk management. Interview transcripts will be in English and Spanish with forward and back translation to ensure accuracy using National Institutes of Health resources. Local and national partners, community organizations, faith-based institutions, healthcare facilities, and advocacy groups identified by the CAP will facilitate dissemination. Digital stories will be distributed across various multimedia platforms to maximize outreach and accessibility, including community web platforms, social media channels, podcasts, local radio stations, educational workshops, health fairs, cultural events, churches, and support groups. Conclusion: Building strategies for improving patient-centered care delivery and community engagement within culturally diverse populations will enhance clinical trial diversity and inclusion. Using digital storytelling as a recruitment strategy for clinical trials can foster trust, engagement, and participation within Black and Hispanic communities. Study findings will contribute to future clinical trial design and recruitment to enhance underrepresented minority participation in clinical research. Citation Format: Yi Liu, Brenda Adjei, Anna Couvillon, Kathleen Calzone, Fatima Karzai. Utilizing digital storytelling to improve the recruitment of Black and Hispanic patients for a genetic predisposition to prostate cancer screening trial [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr A115.

Sounding out solutions: using SONAR to connect participants with relevant healthcare resources.

This article outlines a scalable system developed by the All of Us Research Program's Genetic Counseling Resource to vet a large database of healthcare resources for supporting participants with health-related DNA results. After a literature review of established evaluation frameworks for health resources, we created SONAR, a 10-item framework and grading scale for health-related participant-facing resources. SONAR was used to review clinical resources that could be shared with participants during genetic counseling. Application of SONAR shortened resource approval time from 7 days to 1 day. About 256 resources were approved and 8 rejected through SONAR review. Most approved resources were relevant to participants nationwide (60.0%). The most common resource types were related to support groups (20%), cancer care (30.6%), and general educational resources (12.4%). All of Us genetic counselors provided 1161 approved resources during 3005 (38.6%) consults, mainly to local genetic counselors (29.9%), support groups (21.9%), and educational resources (21.0%). SONAR's systematic method simplifies resource vetting for healthcare providers, easing the burden of identifying and evaluating credible resources. Compiling these resources into a user-friendly database allows providers to share these resources efficiently, better equipping participants to complete follow up actions from health-related DNA results. The All of Us Genetic Counseling Resource connects participants receiving health-related DNA results with relevant follow-up resources on a high-volume, national level. This has been made possible by the creation of a novel resource database and validation system.

"Exercise… to Me, It's Freedom": Motivation, Support, and Self-Management to Keep Physically Active with Parkinson's Disease: A Qualitative Study.

The benefits of exercise have been widely explored among people with Parkinson's (PwP). Exercise can improve non-motor (fatigue, pain, sleep, etc.) and motor features (balance, muscle strength, gait speed, etc.), maintain function, as well as prevent disease progression. Although the benefits are well known, PwP continue to show difficulty adhering to physical activity and exercise. This study aims to explore motivation to exercise, support, and self-management needs among people with Parkinson's, their family members, and physiotherapists. Purposeful and maximum-variation sampling methods (age, sex, geographical setting, and disease severity) were employed. PwP and family members were recruited through physiotherapy services and local support groups. Twelve semi-structured interviews with PwP and two group interviews, one with family members (n = 4) and one with physiotherapists (n = 5), were conducted. Interview guides were informed by patient-public input and a recent systematic review. Interviews were recorded, transcribed, and analysed using thematic analysis informed by the Grounded Theory methodology. Four common themes emerged: (1) The value of an intrinsic connection with exercise, for which there are challenges. A greater connection to exercise led to long-term adherence. (2) Adapting exercise to the needs and preferences of a person is essential. Preferred exercises and environments were mixed, with differences emerging between sexes. (3) Physiotherapists' aim to only maintain physical function led to frustration. Limited self-management opportunities, stigma, and dehumanisation were discussed. (4) Non-motor symptoms, stigma, fear, and determination as well as apathy, pain, and low mood were discussed. Exercise provided physical, emotional, and social rewards. Supports are necessary; however, challenges arise when PwP's motivations are mismatched to family members' and physiotherapists' goals. Co-created goals, tailored to their preferences, and exercise plans with supported self-management are recommended.

A QUALITATIVE EXPLORATION OF THE EFFECT OF A METASTATIC BREAST CANCER DIAGNOSIS ON PHYSICAL ACTIVITY AND QUALITY OF LIFE

BACKGROUND Physical activity is beneficial for people living with metastatic breast cancer, a cancer that has spread to other body parts such as liver, lungs and lymph nodes, but less is known about patient views on supporting them in an active lifestyle. Through a qualitative scope this study aimed to investigate the effect of a metastatic breast cancer diagnosis on physical activity and quality of life aiming to capture exercise motivators, barriers, and preferences to inform and introduce feasible and effective physical activity in treatment plans. METHODS This study involved semi-structured interviews with eight female participants from the local Metastatic Breast Cancer Support Group in Portsmouth. RESULTS Reflexive thematic analysis was conducted on the data, and five higher order themes were developed: (i) Life is affected by diagnosis and treatment, (ii) Limitations to being more physically active, (iii) Physical activity’s impact on quality of life, (iv) Factors supporting/enhancing physical activity and quality of life, and (v) Actions to support physical activity and quality of life. Generally, participants reported that living with metastatic breast cancer had negatively altered their quality of life, including their ability to be physically active. Perceptions of the introduction or continuation of physical activity were welcomed. Despite the benefits and factors found to support physical activity engagement several barriers were identified, such as treatment focus and exercise misconceptions. CONCLUSION Metastatic breast cancer impacts quality of life and the ability to be physically active, being active is generally perceived to be beneficial, and social and environmental support is important to being physically active.

Living with epilepsy: patient knowledge and psychosocial impact

Background. People living with epilepsy (PLWE) often face psychological comorbidities and social challenges due to low levels of knowledge and awareness about epilepsy, as well as personal experiences with the condition. This can result in a low quality of life for PLWE.Objective: to investigate the psychosocial impact of epilepsy on patients residing in rural regions of South Africa (Limpopo and Mpumalanga Provinces).Material and methods. A non-experimental quantitative research was conducted, which involved 162 respondents living with epilepsy. Most were males, and the majority were between 18 and 35 years old in both provinces combined. The participants were offered a questionnaire divided into three sections comprising sociodemographic aspects, questions that assessed knowledge, and questions on the psychosocial impact of epilepsy.Results. I t was shown that while PLWE have a solid understanding of epilepsy as a medical condition, they may not fully comprehend its effects on daily life. For example, many respondents felt shameful after having a seizure and difficulties in forming relationships, and a significant proportion stated that they were never married because of epilepsy. The study highlights the significant psychosocial impact of epilepsy on PLWE, including depression, difficulties in forming and maintaining social connections, and a lack of marital experience.Conclusion. To improve PLWE’s quality of life, the psychological help is recommended through healthcare facilities or local support groups.

The Lived Experiences of Anxiety and Depression Support Philippines’ (ADSP) Members amid Public Stigma: A Phenomenological Hermeneutic Study

The study is a qualitative phenomenological hermeneutic that explored the lived experiences of Anxiety and Depression Support Philippines' (ADSP) members amid public stigma and the role of ADSP in these experiences. The main purposes of the study are (1) to fill the gap in the literature on the role of local mental health peer support groups in the lives of its members amid public stigma and (2) to highlight the role of local mental health support groups. Six participants were interviewed with a semi-structured interview protocol through Zoom. A step-by-step procedure of Creswell's thematic analysis was employed. The emerging themes and subthemes were the following: Major Textural Theme 1, Day-to-Day Personal Challenges (with subthemes, Somatic Symptoms and Costly Treatment), Major Textural Theme 2, Stigma Experienced from the Public (with subthemes, Invisibility of Mental Health Condition, Imposement of Spiritual Beliefs, Pill Shaming Phenomenon, and Deregatory Stereotypes), Major Structural Theme, Meaning (with subthemes, Shared Struggles, Acknowledgment of Proper Treatment, and Being Unbothered), and Major Textural Theme 3, Role of ADSP (Providing Emotional Support, Preventing Suicide, Assisting in Help-Seeking, and Actualizing Potential). Some of the recommendations were future research to examine and explore the structure and dynamics of Filipino-based mental health support groups to further address the needs of individuals with mental health conditions or psychological disorders (particularly anxiety and depression) and national-level encouragement of the development of accessible Filipino–based mental health support groups. The research will also contribute to the pool of local research exploring the same topic or related topics.

Effects of Anxiety, Stress and Perceived Social Support on Depression and Loneliness Among Older People During the COVID-19 Pandemic: A Cross-Sectional Path Analysis.

During the COVID-19 pandemic, older people were exposed to high levels of anxiety and stress leading to loneliness and depressive disorders. The purpose of the present study was to investigate the effects of anxiety, positive coping, perceived social support, and perceived stress on depression and loneliness among older people during the COVID-19 pandemic. This was a cross-sectional online/telephone survey. A non-probability convenience sampling method was used. Participants were 112 people aged 60 years and above, without cognitive impairment, who experienced confinement (from March 2020 onward) and had access to the internet or telephone. A path analysis model showed a direct significant effect of anxiety on both, depression (β = .68, P < .001) and perceived stress (β = .65, P < .001), as well as an indirect effect of anxiety on loneliness via perceived stress (β = .65) * (β = .40); and social support (β = -.21) * (β = -.20). The model showed adequate fit χ2(df = 4) =5.972, P = .201; RMSEA = 0.066 (0.000, 0.169), CFI = 0.992; TLI = 0.970. Anxiety had a significant effect on depressive symptoms as well as on loneliness via perceived social support and perceived stress. According to our findings, in order to reduce depressive symptoms and perceived loneliness, it is essential to develop timely interventions that decrease levels of anxiety and stress and increase levels of perceived social support in older people, particularly when there are any restrictions, physical or contextual, that prevent face-to-face contact. This can be achieved by implementing preventive community-based programs, enhancing accessibility to mental health services, and collaborating with local support groups, among others.

Dietary Patterns Among Individuals with Plasma Cell Disorders Compared to the General US Population

Background Increasingly, there is evidence supporting the benefit of healthy dietary habits during prevention, treatment, and survivorship. The median survival for patients with multiple myeloma (MM) has increased from approximately 3 to 10 years in the last decade necessitating discussions about the integration of lifestyle medicine. MM patients with healthier pre diagnosis dietary patterns have longer survival than those with less healthy diets ( Lee et al. IJC 2020). Similarly, higher adherence to the Healthy Eating Index (HEI)-2015 has been associated with reduced all-cause and cancer-specific mortality ( Shan et al. JAMA 2023). A higher HEI score has been linked to reduced risk of chronic diseases as well. However, there is a paucity of demographic data for dietary patterns in individuals with plasma cell disorders (PCDs). Therefore, we examined the dietary patterns of individuals with PCDs in comparison to the US population. Method This study used the validated Block Food Frequency Questionnaire (FFQ) to survey individuals with a known history of a PCD in HealthTree Cure Hub, a patient data portal hosted by HealthTree Foundation. The questionnaire was used to calculate HEI-2015 scores which include 13 components that reflect the recommendations in the Dietary Guidelines for Americans, 2020-2025, with higher scores indicating greater adherence to the guidelines. Fruit (cup equivalents/day), vegetable (cup equivalents/day), fiber (grams/day), and sugar (grams/day) were also calculated. Mean values were compared using the Kruskal-Wallis test across subgroups: age, sex, race, body mass index (BMI), type of PCD, and level of education. In addition, with Z-test, HEI scores from participants in this study were compared to HEI scores of the general US population from National Health and Nutrition Examination Survey (NHANES) across age, sex, and race. Results We received 152 survey responses. Older age groups, and individuals with lower BMI had higher HEI scores (p=0.003 and p=0.016, respectively). There was no difference in HEI scores based on sex, race, or type of PCD. There was a trend for higher HEI scores with higher levels of education (p=0.093). There was no significant difference when comparing fruits, vegetables, fiber, and sugar intake between different subgroups, with the following exceptions: individuals aged ≥71 years (1.85; 95% CI 1.47-2.23) had higher total fruit consumption compared to those aged 60-70 (1.41; 95% CI 1.19-1.64) and 30-59 (1.31; 95% CI 0.84-1.78) (p=0.026), and individuals with graduate or professional degrees (1.79; 95% CI 1.46-2.12) had higher total fruit consumption compared to those with bachelor's degrees (1.27; 95% CI 0.83-1.7) or below (1.36, 95% CI [1.01-1.71] ) (p=0.008). Compared to the general US population, participants with PCDs had higher HEI scores across age, sex, and race (p&amp;lt;0.0001). Discussion In this study, the differences in HEI scores between subgroups categorized by age and BMI are consistent with trends seen in the US population. We found that younger individuals and individuals with elevated BMIs have worse HEI scores, suggesting these subgroups may derive greater benefit from dietary interventions. Given the association between a higher education level and higher fruit consumption (and the trend towards higher HEI scores), dietary interventions should discuss affordable alternatives. The higher HEI scores in our survey compared to the US population may suggest individuals with PCDs are more aligned with the Dietary Guidelines for Americans, although there is still considerable room for improvement. This difference may be due to improvements in diet post PCD diagnosis ( Malik et al. BCJ 2022), or due to a selection bias with individuals interested in the role of nutrition or greater awareness of nutrition being more likely to participate. Additionally, many participants heard of this survey through talks on nutrition organized through their local support groups and the HealthTree Nutrition and Wellness Chapter. This difference may also be explained by the difference in the assessment method used by NHANES (24-hour dietary recall) compared to the FFQ used in this study. Conclusions Individuals with PCDs (especially younger individuals and those with an elevated BMI) may benefit from interventions to improve dietary patterns. Subsequent studies to correlate healthier diets with long-term outcomes in patients with MM need to be performed.

Parents’ Views on Autopsy, Organ Donation, and Research Donation After Neonatal Death

Parents who experience neonatal loss have the option to participate in autopsy, organ donation, and research donation. However, clinicians are uncomfortable discussing autopsy and may not be aware of research and organ donation opportunities. To capture the perspectives of parents who had experienced neonatal loss about autopsy, organ donation, and research donation. This qualitative study used virtual focus groups with parents who attended a local bereavement support group in the US. Participants were recruited from Helping After Neonatal Death, a support group with a local chapter. Participants self-selected from an email request if they met the following criteria: aged 18 years or older, English speaking, at least 6 months elapsed since neonatal death, and access to a video conference device with internet. Focus groups took place between April and September 2021. The recorded sessions were analyzed using a grounded theory-informed approach by the research team that included parents with experience of neonatal loss. Data were analyzed from December 2021 through December 2022. A total of 14 mothers engaged in the focus group; 9 (75%) were aged 30 to 39 years, and 8 (66%) were White. The mothers were overall well educated. The first main theme grew from the lived experience of neonatal loss, specifically the importance of offering all parents the option to donate, rather than prejudging who would or would not be interested. Parents of neonates who die have few opportunities to parent that child and make loving decisions for them. Participants emphasized that the conversation about autopsy, organ donation, and research donation, albeit difficult, can offer a meaningful parenting experience. A second main theme that emerged related to how organ or tissue donation could provide additional meaning to a child's life. These choices contributed to building a legacy to honor their child's memory, which also helped with grief and coping with their loss. A third theme included recommendations to clinicians and health systems for improving communication, including written information for parents and communication training for health care professionals. In this qualitative study, parents who experienced neonatal loss endorsed the importance of offering parents the choice of autopsy, organ donation, or research donation with skillful and empathetic communication. They provided practical recommendations to improve communication and empower families.

A qualitative study on the role of financial toxicity on adoption of healthy lifestyle behavior after breast cancer among Black and Latina women.

273 Background: This study aims to understand the role of financial toxicity on lifestyle behavior change for Black and Latina breast cancer survivors. More specifically, we sought to identify the strategies that survivors employed to overcome the effects of financial hardship on behavior change. Methods: A secondary analysis was conducted on qualitative interview data of 26 breast cancer survivors who self-identified as Black or Latina and 10 healthcare providers from an oncology setting. Transcripts were coded using deductive and inductive approaches by a team of three coders and aggregated into thematic categories using content analysis. Results: Barriers identified by survivors included the high cost of healthy food and gym memberships, challenges with unemployment during cancer treatment, and transportation. To address these barriers, survivors relied on strategies that utilized three levels of access: interpersonal, community, and institutional. At the interpersonal level, access to resources was mediated by the self, friends, and family. This strategy involved getting family members to help with bills and incorporating alternative approaches to exercise such as working out at home or going on walks with family. At the community level, access to resources was mediated by local organizations and support groups. This strategy involved receiving free food from church, free exercise programming from local organizations, and/or using government-based resources to mitigate food and housing insecurity. Finally, at the institutional level, access to resources was mediated by the multidisciplinary oncology care team to identify availability and eligibility and apply for various types of resources. This strategy involved social workers facilitating knowledge and assistance for grants to access financial resources and transportation for appointments. Conclusions: The study found that financial toxicity among Black and Latina breast cancer survivors influences their ability to afford, implement, and maintain healthy behavior changes after cancer. Participant identified strategies offer potential venues for interventions that couple financial toxicity mitigation strategies with lifestyle behavior change after breast cancer for Black and Latina women.

Small CBPR Grants Program: An Innovative Model to Build Sustainable Academic-Community Partnerships.

Community-based participatory research (CBPR) is an effective approach for addressing health disparities by integrating diverse knowledge and expertise from both academic and community partners throughout the research process. However, more is needed to invest in the foundational infrastructure and resources that are necessary for building and maintaining lasting trusting research partnerships and supporting them to generate impactful CBPR-based research knowledge and solutions. Small CBPR Grants Program is a CBPR-seed-funding program that may be particularly helpful to minority-serving institutions' and universities' goal to invest in genuine community-engaged participatory research. Between 2016 and 2019, the Morgan State University Prevention Sciences Research Center, in collaboration with other community and academic organizations, provided 14 small CBPR awards to new partnerships, and evaluated the success and challenges of the program over a period of three years. To achieve our goal, technical support and training were provided to these partnerships to help with their growth and success. The expected outcomes included trusting relationships and equitable partnerships, as well as publications, presentations, and new proposals and awards to work on mutually identified issues. The program's resulted in continued partnerships beyond the program (in most cases), a founded CBPR Center namely ASCEND, and several secured additional fundings. Keys to the program's success were supporting the formation of research partnerships through networking opportunities and information sessions, as well as providing small grants to incentivize the development of innovative concepts and projects. A learning network and local support group were also created to enhance productivity and the overall impact of each project.

Intervention Mapping as a Framework for Developing and Testing an Intervention to Promote Safety at a Rail Infrastructure Maintenance Company

In this article, the authors apply the intervention mapping (IM) protocol to develop safety leadership training for a rail infrastructure maintenance company. The IM protocol helps to create an evidence-based intervention in a structured way, based on concrete evidence. The application of IM within the occupational safety domain is limited, a research gap that this article bridges with the development and testing of a safety leadership intervention to promote safety behavior among managers. The company was positively and actively engaged in the training program thanks to the IM protocol. The local support group took full advantage of the opportunities to provide input during the development of the training’s various components. Despite this, interpersonal problems within the leadership team itself, such as a lack of psychological safety, were not identified during the needs assessment. These issues had an impact on the overall effectiveness of the training, as they manifested during the training when managers met physically for the first time in several years (due to the coronavirus). Our IM protocol will be adjusted accordingly for future applications, and we hope that sharing our experiences will enable fellow researchers to avoid this problem.

Climate Change and Health: Challenges to the Local Government Environmental Health Workforce in South Australia.

Climate change is the most urgent and significant public health risk facing the globe. In Australia, it has been identified that Environmental Health Officers/Practitioners (EHOs/EHPs, hereafter EHOs) are a currently underutilized source of knowledge and skills that can contribute to climate change adaptation planning at the local government level. The ability of local government EHOs to utilize their local knowledge and skills in human health risk assessment during a public health emergency was demonstrated through their role in the response to COVID-19. This study used a survey and follow up interviews to examine the roles and responsibilities of EHOs during the COVID-19 pandemic and used the results to examine the potential of the workforce to tackle climate change and health related issues. What worked well, what regulatory tools were helpful, how interagency collaboration worked and what barriers or hindering factors existed were also explored. A workforce review of EHOs in South Australia was also undertaken to identify current and future challenges facing EHOs and their capacity to assist in climate change preparedness. The findings demonstrated that the workforce was used in the response to COVID-19 for varying roles by councils, including in education and communication (both internally and externally) as well as monitoring and reporting compliance with directions. Notably, half the workforce believed they could have been better utilized, and the other half thought they were well utilized. The South Australian Local Government Functional Support Group (LGFSG) was praised by the workforce for a successful approach in coordinating multiagency responses and communicating directions in a timely fashion. These lessons learnt from the COVID-19 pandemic should be incorporated into climate change adaptation planning. To ensure consistent messaging and a consolidated information repository, a centralized group should be used to coordinate local government climate change adaptation plans in relation to environmental health and be included in all future emergency management response plans. The surveyed EHOs identified environmental health issues associated with climate change as the most significant future challenge; however, concerningly, participants believe that a lack of adequate resourcing, leading to workforce shortages, increasing workloads and a lack of support, is negatively impacting the workforce's preparedness to deal with these emerging issues. It was suggested that the misperception of environmental health and a failure to recognize its value has resulted in a unique dilemma where EHOs and their councils find themselves caught between managing current workload demands and issues, and endeavouring to prepare, as a priority, for emerging environmental health issues associated with climate change and insufficient resources.

Addressing the information needs of informal carers in Malawi: a healthcare intervention based on co-creation

PurposeThe aim of this study was to address the unmet information needs of Malawian informal carers. We report on a three-year project which we co-created with informal carers, medical doctors and NGOs with the view to disseminate health advisory messages.Design/methodology/approachThis study was developed on the principles of co-production. The impact of our health advisory messaging approach was assessed through observations and questionnaire-based surveys for quality, clarity and usefulness.FindingsThe messages were disseminated beyond the local support groups and reached a much wider community via word of mouth. The messages also led to short and medium term benefits for informal carers and their loved ones.Originality/valueOur findings highlight the importance of understanding the contextual conditions of informal caring and that of co-producing interventions with the people these aim to benefit.

'All together now': Facilitators and barriers to engagement in mutual aid during the first UK COVID-19 lockdown.

Despite undeniable hardship, the onset of the COVID-19 pandemic also saw an outpour of community solidarity and mutual aid towards those in need. This study explored why people participated in mutual aid during the pandemic as well as the factors that contributed to continued involvement and/or its decline. We conducted remote interviews with 17 people in South-east England who had been involved in volunteering and local community mutual aid support groups during the first UK lockdown from March to May 2020. Using thematic analysis, we identified two themes: 1) The emergence of social groups and their psychosocial effects, and 2) Enduring connections and barriers to continued participation. Participants often reported an emergent shared identity, preferring the localised nature of these groups and the associated mutual nature of support. They also reported intentions to continue providing such support, should the need arise again, and any barriers to continued involvement in mutual aid were better explained by structural and systemic issues, rather than individual motivational factors.

Parents’ experience of children with acquired brain injury undergoing neuro-rehabilitation: thematic synthesis protocol

IntroductionChildren with moderate to severe acquired brain injury frequently require a period of demanding medical and rehabilitative care to optimise their long-term capabilities and quality of life. Usually, the initial...

Psychosexual responses to BRCA gene mutations in women of childbearing age.

Diagnosis of a BRCA gene mutation presents a dilemma because life-changing medical decisions must be made to prevent breast and ovarian cancer. There is minimal evidence regarding how psychosexual functioning, psychological well-being with regard to body image and sexuality, affects the decision to have prophylactic treatment in women of childbearing age (WCBA; 18-49 years) with a BRCA gene mutation. To explore, describe, and interpret the experience of women with a BRCA mutation during the treatment and decision-making process. A qualitative descriptive design was used to recruit participants online through social media postings and from national and local BRCA support groups. Participants participated in semistructured interviews exploring their experience after BRCA diagnosis. Interpretive descriptive analysis was used to identify themes. The purposive sample comprised 18 women aged 21-49 years. Four major themes, such as body image, sexuality, femininity, and childbearing/childrearing, were identified that influenced decisions related to the diagnosis and management of a BRCA mutation. All participants voiced that concerns regarding body image and sexuality caused hesitancy in their decision to have prophylactic surgery. Women who had undergone bilateral prophylactic mastectomy were concerned about the impact of the surgery, scarring, breast disfigurement, and the lack of sensation resulting from surgical intervention. Psychosexual concerns arise from internal and external influences that significantly affect the decision to undergo prophylactic measures. Therefore, body image, sexuality, and sexual orientation should all be addressed during the decision-making process. Provider communication and preparation for realistic surgical outcomes can be improved to assist WCBA throughout the decision-making process and enhance psychosexual functioning.

Abstract TP50: Exception From Informed Consent (EFIC) In Emergency Research: Developing A Community Consultation Plan

Background: In emergent situations where patients are neurologically impaired, obtaining informed consent is a challenge. Research-related interventions that may optimize patient outcomes may be delayed or not given. Under the Final Rule, emergency research studies can proceed without informed consent granted that certain criteria are first met. One criteria is that researchers must conduct community consultation activities. Objective: We share the various mechanisms used in outreach to our catchment area and their respective views of EFIC research. Methods: As part of community consultation efforts for an emergent hemorrhagic stroke trial, our research team first developed a comprehensive plan to seek out the best platforms to disseminate study information and obtain diverse input (all while recognizing the heterogeneity of the community). A survey tool developed by the study’s sponsor National Institute of Health StrokeNet team was used to elicit feedback related to the value of the trial, participants’ understanding of EFIC, and trust in physician-investigators. Results: A total of 700 individuals participated across all the proposed community consultation events (e.g. focus groups, local support groups, forums). Two-hundred five participants completed the survey, with 96% agreeing that the trial is an important study to do; 80% were in favor of themselves or a loved one being included in the trial without consent. Community members responding included seniors, those at higher risk of suffering a stroke, and medical providers. Minority communities (i.e. Hispanic &amp; African American populations) were contacted to ensure that their voice was heard. We used public disclosure to assist in reaching minority groups. Despite receiving only 22% turnout from these community members, the feedback received demonstrated the need to continue to make a collective effort in gaining the trust of these populations through community liaisons. Conclusion: Overall, community members expressed high levels of support for this EFIC trial. By incorporating a wide variety of mechanisms into a community consultation and public disclosure plan, maximal support for EFIC can be achieved.